Research reveals racial and ethnic disparities in benefits eligibility and spending among autistic adults

A recent peer-reviewed study published in May in PLOS One reveals significant disparities in eligibility for Medicare and Medicaid coverage among autistic adults, as well as inequities in spending for people enrolled in these programs.

The study looked at 2012 data from 172,071 adults enrolled in Medicare and/or Medicaid who met the criteria for autism spectrum disorder and submitted complete race-ethnicity data. The data analysis showed significant differences in Medicare and Medicaid eligibility across racial and ethnic groups. 

About half of white adults (49.9%) were fully eligible for both Medicare and Medicaid. In contrast, only 37.5% Black, 35.9% Hispanic and 34.7% Asian/Pacific Islander adults had dual eligibility, with most only eligible for state-funded Medicaid. Hispanic adults under age 45 were significantly less likely to be fully eligible for both benefits than white adults, while Black adults of all ages were significantly less likely to be dual eligible than white adults.

In fact, white autistic adults were more likely to be dual eligible for Medicare and Medicaid compared to every other racial and ethnic group, even after controlling for gender, intellectual disability, chronic condition, county median income, rural county and geographic region of residence. This means that white autistic adults generally had more coverage options for health services than people of color.

The study also found disparities in spending across both Medicare and Medicaid programs. The total annual spending for each adult dual enrolled in both programs was $59,013 for white adults, $47,405 for Black adults, $46,252 for Hispanic adults, $42,097 for Asian/Pacific Islander adults and $45,897 for adults of other races. Asian/Pacific Islander adults received the least spending compared to white adults.

These results reveal that while public health insurance options like Medicare and Medicaid aim to reduce inequities in healthcare access due to disability, income or old age, disparities remain across racial and ethnic groups. Differences in eligibility and spending continue to negatively impact autistic people of color as they transition to public-sector health coverage after high school.

One possible cause for these disparities is the difficulty of obtaining a disability determination. Because autistic adults with dual eligibility were more likely to be eligible for these programs on the basis of disability rather than age or income, with 91.2% eligible for Medicaid and 97.8% eligible for Medicare due to a disability, a Social Security disability determination is nearly always required to access these benefits.

However, the pathways to dual eligibility status are more difficult for communities with lower rates of diagnosis and less access to support. Many individuals report that obtaining a Social Security disability determination is a challenging, time consuming process that requires education from providers and support from attorneys. Autistic adults without the time, money or knowledge to navigate these processes have a lower likelihood of achieving disability status or becoming dual eligible for both Medicare and Medicaid.

Policy changes are needed to ease these disparities through education, outreach and system navigation supports, particularly for individuals from racial and ethnic minority groups.